Monday, February 29, 2016

I found this in my inbox this morning and had to share it with y'all. Never thought of this analogy but this is a great one. Can you guess which one I am and which one are you or would you want to be? Read on and decide.

A young woman went to her grandmother and told her about her life and how things were so hard for her. Her dreams of buying her own land and building a homestead kept running into funding setbacks – she was devastated. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as soon as one problem was solved, a new one arose.

Her grandmother took her to the kitchen. Slowly she filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her granddaughter, she asked, ‘Tell me what you see.’

‘Carrots, eggs, and coffee,’ she replied.

Her grandmother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The grandmother then asked the granddaughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.

Finally, the grandmother asked the granddaughter to sip the coffee. The granddaughter smiled as she tasted its rich aroma. The granddaughter then asked, ‘What does it mean, grandmother?’

Her grandmother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you?” she asked her granddaughter. “When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity? Do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain.. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level?

How do you handle adversity? Are you a carrot, an egg or a coffee bean?

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes along their way. The brightest future will always be based on a forgotten past; you can’t go forward in life until you let go of your past failures and heartaches.

When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you’re the one who is smiling and everyone around you is crying.

Sunday, February 28, 2016

As a physically disabled person, safe accessibility is of paramount importance. Having clear, level walkways makes sense right? Having accessibility in the home you lived in before your stroke is another issue entirely. Not everyone can afford to buy a more accessible house. Most of us just have to make do.

I'll use my current home, the house I'm moving to and our future home as examples.

My current home- when I came home from the rehab hospital, I had a few aids that I didn't have before like a portable toilet, bath chair, a hemi walker, and a wheelchair. That's just some very basic equipment. My house was built in 1959. It was only partially accessible before we bought it. I was technically disabled by my spine injury and bionic joints prior to its purchase. I knew my limitations like a flight of steps. Yes, I could climb stairs, but at times it was a scary proposition. The idea of climbing them several times a day made it a hardship issue. So a single story house was searched for and found. The house is not without steps though. There are two small steps and a door jamb to get into the front door. There was also a six-inch step down into the back room we slated as my office. This wasn't a deal breaker at the time. Of course, only the front and back doors were 36" wide.

Jump ahead almost seventeen years. My husband's medical condition worsens to where he cannot walk and I have a stroke. Those little steps posed a problem and ramps had to be built. My lower kitchen cabinets become impossible to see and reach inside. The top shelves in my upper cabinets also become inaccessible because I have to step up on a stool to reach them. Sliding and drop down baskets had to be installed to make them usable and handicapped friendly. In fact, my house was going through an expansion/renovation at the time of my stroke was a good thing. Although most of the money saving DIY projects had to be outsourced because I was physically unable to do them. Insulation and dry wall hanging are best left to someone with good balance and two hands. Especially ceilings. :o Not that I didn't think about it.

One of our biggest problems was door widths and wheelchair access. I can't tell you how many bruised and bloody knuckles my husband and I endured before we could replace the interior doors with their 36" counterparts. I was lucky enough to have a 3 1/2 foot hallway with an end by the back bedrooms wide enough to turn around a wheelchair in.

The biggest hurdle was the necessary room. You know the room I'm talking about...the bathroom. The portable commode made easy work of raising the toilet seat to a more manageable height. A pain to clean because it's plastic. Nice arms to make getting up and down, or even help balance you while standing. The bath chair fit inside the cast iron tub because I opted for the one without the transfer bench attachment. Both of my bathrooms have the standard 1950s tub/shower, a commode, and single sink. With just enough room to turn around in. A 5x7 piece of bath carpet fits perfectly with

cut outs around the commode base and sink. The major headache was the bathroom doors...27." They would have to be enlarged which meant restudding the whole wall and changing some wiring. The gift of a walk in tub from my children for father's day was a godsend even though it also meant flipping around how all the fixtures went. Remember the concrete slab that made the house so easily accessible to the inside? A major renovation project to make it easily accessible. It's not the tub that makes the basic walk-in tubs expensive, but the installation. $10K later, I had one bathroom accessible. Sort of. A year later my plumber installed a handicapped toilet. Showers are nice but sometimes you want to kick back and relax in a hot bath. Preferably with a glass of nonalcoholic wine (for me), a good book, some semi sweet chocolate and tons of fragrant bubbles. It was worth every penny! Yes, it's a female thing.

I finally finished the journey to make my old, ranch style home handicap accessible. So what do I do?

I put it on the market and move away to a double wide trailer on a mountain side. Welcome to a whole new set of accessibility challenges. Except I know that this trailer is a stepping stone of only two years so I'm not going to put a lot of money into renovating it. I'll make do with the old shower chair and portable, bedside commode once again. Yes, we'll have to rework the kitchen a bit. But with an outdoor kitchen already set up counter high. It won't be too difficult, but access into the house is. A more "permanent" set of concrete stairs will replace the wooden rickety ones. A ramp will be built onto the back porch. Right now, this place is an accessibility nightmare, but once inside, it's accessible with wide doorways and flat layout.

In two years, Mel and my house will look like this. Roughly... the space between the two containers will be wide enough for a kitchen and common living room with sliding door access between the two containers. All floor spaces will be flat with a ramp to the right of the porch. Of course, my private side will have a perfectly accessible, handicapped bathroom.

The layout is just a concept right now. Definitely a lot more windows for natural light. A stucco finish on the outside and you'd never know it was shipping containers to begin with. Yes, it will be off the grid too with solar power and a wood stove for heat and cooking. A gray waste water recycling system underneath the house will water the fruit and nut orchard on the back side of the house. The metal garage will stay where it is and a sister out building will be "The Warren" will house the rabbitry. Compacted gravel walkways will provide sure footing for me. The chicken coop is behind the metal garage. In front of the rabbitry will be my raised beds for planting. Ten organic planting, elevated raised beds are being built out of used pallets as I type. We negotiated a labor cost cutting barter of free meals while on the job for the construction crews for the clearing and leveling some of the land. It cut our costs by 50%.

Mel asked me where we will live once the trailer is gone and before the new house is livable last week during one of our brain-storming sessions. My answer...The Warren, of course. I mean it will be a 12x20 climate controlled space. Rabbits don't take up that much space.

So what can one partially paralyzed, spastic, post stroke woman do? Anything she darn well wants to! More on this as we make positive progress on fulfilling our dream/goal of self sufficiency. We will be starting another website, blog and YouTube channel to document it all too. So stay tuned. Four weeks and counting down until blast off.

Monday, February 22, 2016

Saturday was my father's birthday. If you remember, he had another heart attack December 31st. We were glad he was still around to celebrate it on Sunday with a huge birthday bash thrown by his wife and neighbors. To everyone else he's good, old Jack, but to me he will always be Daddy. Yes, after all these years, I still call him Daddy.

He's a little bit more fragile with the passing years, but he's getting along pretty good for a man of his

About a 1/3 of us

advancing age. The day was filled with laughter and tears. He was surrounded by family (children, grandchildren, and even great-grandchildren) He's got a lot to be grateful for and knows it. His neighbors are fabulous people. All it would take is a phone call from my stepmother that he's fallen and can't get him up, and they'd drop whatever they were doing to help. Most of us, these days, count ourselves as lucky if we even know our neighbors' names.

As always food abound. Mass quantities were prepared by these same neighbors who cooked for me and mine after my beloved died. They are more than neighbors, they are officially my extended family. No really! My oldest grandson stated dating, the catty-cornered girl next door. Her uncle is one of my father's neighbors. It's all relative now that the two youngsters are serious. You could call it a small town mentality or a deep south thing except we aren't a small town with a population of over 100K (my daughter and her family actually live in another town all together) and the fact that we are transplanted southerners. But, it's still great that we can have the small town relationships.

The reason why we had Daddy's birthday party on Sunday is because my oldest daughter got married on Saturday. She's the one moving to Alaska in a few weeks. She and her beloved wanted to be married surrounded by their friends and family before the big move. I can't blame her.

Her beloved's divorce was supposed to be finalized in December 2015. So they planned their wedding accordingly. Wedding take a lot of planning, invitations sent out well in advance, formal wear to purchase and rent, flowers, the cake, etc. They wanted to have everything done before he got transferred out of the lower 47 States. Not many of us would be able to fly to Alaska.

As of Friday last, the judge had not signed the divorce decree. Without the final paperwork the couple could not get a wedding license. So what's a girl to do? I mean everything was set up for their wedding. They had an unwedding of course. I mean everything was bought, rented and paid for by this time. A friend of theirs "officiated" the wedding ceremony because legally I couldn't. Nobody wanted to to go jail.

It was a beautiful service. Fairly fun reception. Just a very long day for me. I'll still be available to marry them official until they leave.

So another busy weekend gone to top off a full week. This week is more of the same. One of these days I'm going to have to find time to pack up my house. The clock is winding down for my big move.

Sunday, February 21, 2016

There are few words or statements that make me red faced angry and want to scream at the person saying them. I'm usually a quiet fighter, and a behind the scenes type advocate, but sometimes I get my dandruff raised and it makes me yell from the rooftop at the stupidity of the person voicing the trite, too often said rhetoric that I read as "I can't be bothered to deal with you anymore." I'll become the champion on my white horse and gird my armor for battle. As with this case...

This case came to my attention a few weeks ago. A young woman (37) with two young children (under the age of five) had a stroke. She had a promising career as a teacher before her stroke. After she hit the post stroke prime, six-month window passed, she was told her recovery was as good as it will ever get. In fact, her insurance was now balking at paying for any other treatment pertaining to her stroke because of this one neurologist's charted note. I'm thankful her neurologist wasn't mine, but now she is a patient of my neurologist and is back in therapies (OT, PT, Speech). :o) Now that she has met the right people, me included, she is fighting the system. She's too young to start giving up. She has too much to live for and yet achieve.

My momma always said to be careful about what comes out of your mouth to others, because once it's out there, it's out there. This woman was beside herself, depressed, and broken, before she came to my attention. Her main rehab was to get her up and walking with assistance, being able to speak a few words, and able to go to the toilet by watching the clock. Now mind you, I'm not knocking these achievements, major quality of life issues, but what about the rest of her quality of life, her self perception, long term goals and hopes/dreams? Where was the encouragement to continue progressing forward? Where was any hope given as even a slim option?

The thing about the professionals that surround a stroke survivor is what they say is usually it. They are the professionals after all. They have a sheepskin to prove it. I too have sheepskins that I can paper a wall with too. But if the professionals don't use it responsibly, the diplomas are no better than an old, beaten up 1960s wallpaper. It's the major reason most patients with long term conditions leave the modern medical world behind. The professionals are at fault. These patients, instead of finding a supportive doctor or therapists that believe it ain't over until you are dead and buried, just drop off the professional medical grid all together. This can be dangerous. Most do not have the knowledge of how to make/improve their lives for the better. They accept these trite judgements as cold, hard facts. I was a medical professional and know this to be true. Professionals, especially, need to engage their brain, before opening their mouths.

Fat lady has sung, not hardly!

The person hearing the fat, lady sing from professionals believe they, the professionals, are right. I'm living proof that THEY ARE WRONG! I've proved the statement "this is the best it's gonna get" wrong more times than proven right in over half a century. I did it from birth (3 month premature, weighing 2lbs) and I ain't about ready to stop now. Yeah, I lucky (sometimes), but I attribute most to God and my fighting spirit. I'm worse than a dog with a big, fatty, meaty bone in "leave me alone I'm working on conquering this" attitude. I also love and thoroughly enjoy proving professional wrong too. (grinning) They don't know everything. They are not God. They only think they are. By making the rhetorical, asinine, and trite statements...they are setting themselves up for a hard crash to Earth by me. Well, truthfully, I love it because they become better practitioners hopefully. No one else will have to listen to their dribble. At least that's usually the case for me.

It will be fun moving to a new town and getting new doctors who don't know my introductory volley of "I was practicing medicine when you were in grade school/ high school/ college/ medical school" when they try the usual pat answers. I expect them to earn their money from me. I mean $250 for fifteen minutes of their time? Not really though, I honestly hate shopping for doctors and practitioners. The wise, wait for me to explain my points. The ones who get fired/brought down hard are the ones who respond with a back with a trite answer. I do my research. Many of them don't have the time. They will either jump on the same page as me, or be several pages ahead of me if they are smart. It isn't pretty to watch a grown person shrink to a couple inches tall, or see their egos busted like a deflated balloon that they worked so hard for. But, somebody has got to do it for everyone else. I'd rather they do it with me than this teacher who took their words to heart and set in concrete. Who is the captain of this ship? Yeah, you're the captain of your dingy. I'm on a battleship God provided me with, so there.

I've got a tribe behind me of hundreds who can back me up with enough facts and figures to bury them. It could be thousands or millions if I had more time than 24 hours a day. If I don't know, one of them will. I'm only five feet tall, but watch me get ten feet and in your face when riled by pat answers. I've got decades of experience behind me. I take nothing at face value. This is MY life we are talking about. What is done and said is up to me to accept. If you have a problem with that, then move over and out the door.

So back to this young woman. She is fighting back. When she has a bad day, she'll call or Skype one of about ten local people. She now has a tribe behind her for support and answers. A good support group/system is essential. The ultimate support group/system is more worthy than gold or money amount of you can ever visualize. She will continue to improve and recover. Her life is blessed and hope filled now that we've deprogrammed her from the "professional" junk.

Monday, February 15, 2016

Well, yesterday was Valentine's Day. My first without my beloved. I'm a little over half the year through my year of firsts since his death. My neighbor knowing this sent her her young son over to visit me. He told me that he felt bad for me being alone. Then he brought forward the arm he had behind his back. He had a small bud vase with three, red silk roses in it and a small bag of chocolate truffles. Such as simple gesture from this little boy brought tears to my eyes as I thanked him. He hugged me back hard and said, "Don't be sad, Mrs. Jo."

I told him that they were happy tears. He turned and went home.

I really hadn't remembered that it was Valentine's Day. I've just been too sick. It's been a heck of a tough month for me and my body. First the episode of breathing difficulties, my heart acted up starting to throw me into congestive heart failure, and now a cold complete with a touchy stomach and the creeping crud. I'm feeling so miserable that unless I have to be somewhere, I stay in my pajamas and robe. Of course spending three days last week at my cardiologist's office on top of my dry needling sessions hasn't exactly left me bursting with energy. My body is just too run down. If it wasn't for my body dying in slow increments, I'd live forever.

I had a visit from my Air Force bound grandson Saturday night. He brought his girlfriend with him. I was the distraction while others prepared her sweet 16 surprise birthday party. If I had my choice of young ladies I'd choose for my oldest grandson...she'd be my pick. They compliment each other perfectly.

As I watch their young love blossom, I can't help but be thankful. Thankful for their mutual respect for each other. Thankful that love still exists and can be shared. And yes, thankful this grandson is taking this relationship slowly. He told me that he knew if he ever messed up with a girl that I'd be seriously disappointed in him so he can wait for the relationship to grow before taking it to the next level. "Grandma, you told me to respect women always and I plan to do just that." Now that statement not only made me thankful but very proud of him. I've always had a very open and honest relationship with my grands.

Every day that passes brings me closer to my moving date. I look around at this town that only had 15K people in it when I first moved here to the now 100K and moving away is bittersweet. But then again, I look forward to fulfilling a long sought after dream/goal. It's tough.

For my New Year's resolution I once again put down losing weight. Isn't that on everybody's list? It's just getting too hard to move this 180 lbs of bulk around. But feeling ill like I had been I really didn't feel like eating much anyhow. According to my cardiologist's scale, I've lost seven pounds this week. That's not counting the 15 lbs of fluid that I gained and lost in my CHF phase. I had made a huge pot of vegetable soup last weekend. It filled almost three, gallon zip lock bags. I just kept adding vegetables that I wanted to eat before I knew it, I had enough to feed an army. I was also trying to clean out my freezer too.

But then I got nostalgic for the Japanese foods I'd had growing up I knew my local Asian food store

Inarizushu

did not have the shaved bonito flakes and the inarizushi (fried bean curds pockets) I was craving. Shaved bonito is a staple of Japanese cooking. I had asked if my local store could order it, but was told that I would have to order them by the case to the tune of $300. That seemed a little expensive for a craving. I went on Amazon and found canned inarizushi for $14 a can of fourteen. The bonito flakes were just as high and I thought it was outrageous! I knew there had to be a better price out there. I hit the jackpot. Inarizushi for $3.50 and a full pound of bonito flakes for $10. I jumped on it buying several of each. I even found the dried green peas my #2 grandson LOVES. These are not the wasabi peas that can be found in most grocery stores, but roasted and dried green peas just rolled in sweet rice and soy flour. I added several 1/2 lb bags to the order. My total plus shipping was less than $50!

So what does this have to do with what I was talking about...cravings, diets, and nostalgia? I'm moving and was afraid that I wouldn't find these pleasure again. If a town the size of this one didn't carry them then I knew where I was moving to wouldn't. It was a panic move on my part. So took about a week to have it arrive at my doorstep. I immediately made a small pot of short grained rice. The fact that white rice is a no-no carb flew out the window as I devoured the first one in a couple bites and then savored the next four. Yes, I made a pig out of myself. But I also was saying good bye to a large part of my life too. I still have a gallon and a half of vegetable soup in my freezer to enjoy too.

I guess the point of this rambling blog is don't be afraid when venturing forth. When feeling peaky and just totally yuck, it's okay to cave, pamper, and spoil yourself. Life's too short to not live it to its fullest.

Sunday, February 14, 2016

Well, I went to the orthopedist again for a follow-up on my shoulder. The good news is that he is no longer strongly suggesting surgery to fix my shoulder. The bad news, dropping the other shoe, is that he said, "It's as good as it's gonna get post stroke and with the spasticity."

I wanted to scream back at him that I needed my right shoulder almost fully functional like it was prior to this event. But I didn't. I bit my tongue because he was partially right.

The spasticity is a major player in my life right now. It mimics a frozen shoulder and arm on bad days. But at least now I can say "on bad days" instead of constantly. That a huge improvement. Unfortunately, my office visit was a couple of days past a tumble for me. I can always count on being more spastic after a fall. At least for a few days. Then my body will recover to it's dry needling success stance of minor spasticity.

What do I classify as a minor spasticity stance? My arm will straighten at the elbow and my shoulder will be able to raise my arm above my head with little or no resistance. I'll have good strength to hold things in position under my arm or with my elbow bent. For me, it's a godsend. For two years I spent with my arm bent at greater than 90 degrees up into my chest with strong spastic muscles. It was only marginally relieved by muscle relaxers and Botox therapies. All the Botox really did was relax the bicep muscles so they didn't painfully cramp and let me straighten my elbow to 45 degrees. But still that was an improvement over non Botox.
What does spasticity in full force look like? For me, the pic is pretty close. I'll no longer put my picture in here because it actually causes pain and discomfort to some readers. It's really amazing the contortion that spastic muscles can position a limb in. Here lately, it's mainly my wrist and finger that go wonky with contortions rather than my whole arm. This is a huge blessing! My fingers will partially straighten and twist in their sockets. Yes, this is painful, but thankfully it hasn't lasted for more than a hour at a time. But I also look at this as an improvement over a tight fist closure I used to have. Even my fingernails bitten down to the quick would draw blood from my palms. Yeah, it was that bad.

Spasticity is the bane of my recovery and my post stroke life. I'd gladly trade them for the clonus tremors that I first had after my stroke any day. Can you believe I'm actually happy to see my arm and leg in tremors? Yep, it's true because it shows the almost absence of spastic muscles. Of course, being an overachiever like I am, I can't just have one or the other, but both. But that's okay. I'm a tough, old bird that even pressure cooking for hours could make me tender. I can take it. But I still look forward to the day when I feel like I've achieved enough to just be normal with just clonus and the spasticity gone. Do I believe this can happen? I'd bet my last plug nickel on it. Hmm, (rattling around in my change collection) gotta make me some more. In the mean time...

Sunday, February 7, 2016

If you read my last post on how my brain sees things now post strokes, then it should be no huge surprised that I'm now considered learning disabled too. Yeah, I still love word clouds also.

So how is all the shortcomings in reading comprehension listed? Funny enough, exactly how I described my my brain in the beginning...dyslexic/ADD. I called it that before I had my psych evaluation, oh, about three years ago and I hit it exactly head on. How did I do this? Was it some previous clairvoyant talent? Nope, not at all. My daughter showed me the way. She's a TBI (Traumatic Brain Injury) survivor. Over the decades, I watched and taught her through her reading comprehension issues. I was a writer and still have a keen sense of observation.

By watching her deal with this disability, I was taught how to deal with mine. All I have to do is remember what she did with such grace. Always, always with an uncompromising sense of humor that is truly Jenn. If I taught her by example how to be this way, how could I do any less.
She took things slow. She didn't kick herself too much. We were always there to play cheerleader. Now she is MY cheerleader as I struggle with re-learning all that I have lost. All victories in the beginning are celebrated. It's fuel to go on to bigger challenges. While the delayed waiting game that is post stroke recovery, it's essential to keep striving to be better.

I spend hours on the computer playing games to regain my word power and correct my spelling deficits. I've been at it for years now and very slowly I am getting better. I spend on average three to four hours a day working on it.

Retraining your brain is never as enjoyable as learning something new for the first time. For example, when Jenn learned a new word in both spelling and reading we could cheer and praise her for owning that word forever. Or until a stroke wipes your memory like a formatted computer hard drive. I'm left with a "Doh! I knew that once upon a time." I'm not really learning something new.

There is nothing exciting about relearning. It's really hard not to kick myself. Mainly because, I often forget what I've relearned. It's a now-you-see-it-now-you-don't crap shoot. With words there are no guarantees that I'll remember it the next day or even five minutes later. I've misspelled "remember" twice now just typing this blog.

Physical recovery like learning how to walk again with partial paralysis is easy by comparison. Sure, I still have my foot inversion which makes stepping a challenge some days, but I can get up and take the necessary steps I need to do to walk. I haven't forgotten that. But my communication skills are in the toilet from one moment to the next. It's a constant challenge to put words on the screen. No matter how hard I work at it, the results are the same. By nature this is a true learning disability. From having to read everything multiple times to seeing red squiggles of misspelled words, it doesn't want to stick in my brain.

Gone are the days of my photo and phonographic memory. I really do miss them. I don't ever know if I'll get 'em back. But what I do know is I'll keep trying.